Tuesday, July 29, 2014

BLACK DRESS DAY! 8th August

BLACK DRESS DAY! The 8th August is Sophia Mirza's birth date. This year would have been Sophia's 40th birthday. Sophia died from severe Myalgic Encephalomyelitis at the age of 32 as a result of medical abuse and ignorance. Sadly no lessons have been learned since her tragic death.

Sunday, July 20, 2014

Celebs Suffer From Illnesses Too | PressRoomVIP

 
Lyme, fibro, ME/CFS, and more!
 

Why I'm feeling so crabby about cancer conspiracy theories | Cath Ennis

 
 
"...ranted about how "all you scientists are sitting on a 100% effective cure for cancer" ("a bunch of vitamins smushed together with proteins" were his exact words), watching millions of people die as we counted the royalty money from the "useless poisons" we were forcing people to take."
 
"There is no "cure" – just incrementally earlier detection, more effective treatments, and – in some cases, such as the HPV vaccine – better prevention."
 
"More importantly, if we really were sitting on a secret cure, no one in this field or any of our loved ones would ever die from cancer"
 
* * *
 
As I've said all along -- Big Pharma might be able to buy off the doctors, but not the patients.  If you were cured by drinking bat guano tea or standing on your head for half an hour a day while wagging your left foot, wouldn't you be all over the internet telling your fellow patients to stop wasting money on doctors?
 
Especially in CFS research, some of our medical experts have CFS themselves.  If herbs or vitamins were a cure, don't you think they'd cure themselves so they'd have more energy to devote to their patients????
 
I am not big on conspiracy theories, though I will admit that "the government's refusal to acknowledge CFS is because it's a bioweapon experiment gone wrong, for which they don't want to pay reparations to patients" is one that sounds plausible. 
 
But Dr. Bell has said in his newsletter that if a cure is found, it's going on his website so patients can avail themselves of it, and I've said much the same thing -- if I hear about a cure, it's going on my blog, in all my online groups, and in private e-mails/phone calls to other patients.  Remember that once it's posted on the internet, it can never disappear entirely.  Even if CDC had the power to remove my blog post and group postings, they can't make the people I've communicated with privately forget what they were told.  And they will tell their friends, who will tell their friends, and eventually word will travel to every major city's CFS support group.

And so it would be if they truly had a cure for cancer -- the patients would be bragging "I was cured by eating SomeWeirdStuff" to anyone who would listen.  The government couldn't keep the patients quiet.  Even if the government threatened them to say nothing, there will always ALWAYS be someone like me who doesn't give a hoot about threats and will shoot off my mouth regardless.
 
Always.
 
 

Friday, July 18, 2014

10 Celebrities with ME/CFS

 
 
Some we knew, some we didn't.
 
 

A Promising New Treatment for Dysautonomia Patients - Synergy Health

 
 
"While cardiovascular medications may be effective in regulating blood pressure and heart rate in dysautonomia patients, they are only palliative in nature, and many patients discontinue them because of the side-effects. Furthermore, cardiovascular medications fail to address the wide array of other common symptoms experienced by dysautonomia patients.

These non-cardiovascular symptoms can be seriously debilitating and include sleep disturbances, fatigue, headaches, brain fog (a form of altered cognitive functioning), temperature intolerance, and bladder or bowel problems."

Thursday, July 17, 2014

A Mystery No Longer? Dr. Bateman on the Big Picture Emerging In Chronic Fatigue

A Mystery No Longer? Dr. Bateman on the Big Picture Emerging In Chronic
Fatigue Syndrome

ME/CFS has been described as a medical mystery, but Dr. Bateman believes
that's wrong. In fact, she believes, for the first time, she has a good
idea what it is.

The light bulb went on for her during the Stanford Symposium and when it
did the puzzle pieces finally starting fitting together for her.

She shared her insights in a recent video presentation. Check out what she
believes is the root cause of ME/CFS in

http://www.cortjohnson.org/blog/2014/07/17/mystery-longer-big-picture-emerging-chronic-fatigue-syndrome-dr-bateman-talks/

Tuesday, July 15, 2014

Sundance Festival Grant to CFS Film

Project Update #31: Sundance Awards DFP Grant to Canary

Posted by Jennifer Brea ♥ Like

Dear Team Canary,

I'm thrilled to announce that Canary in a Coal Mine has been chosen as a Sundance Institute Documentary Film Program grantee. We are one of 44 projects selected from over 600 applications from 69 countries around the world.

The Sundance Institute is non-profit organization that provides creative and financial support to filmmakers and independent artists developing original stories for screen and stage. Among its many events, it hosts the Sundance Film Festival each year in Park City, Utah, one of the country's premiere venues for independent film.

With this grant comes the opportunity for a working relationship with Sundance throughout the rest of the production of the film, as well as opportunities to participate in fellowships and workshops with leading filmmakers. 

You can read about some of the other projects being supported this cycle. We are in some incredible company! https://www.facebook.com/media/set/?set=a.10152331427833515.1073741870.7148723514

We who have been made voiceless and invisible for too long know the power and importance of our story. To change minds in the larger world, however, we must reach beyond our community to inspire and motivate to action an even wider circle of allies. The support of the Sundance Institute will greatly help our efforts to bring Canary to the widest possible audience. 

My thanks to all of you for believing in this film. We still have a very long way to go, but I am amazed at how far we have already come, together.

With gratitude,

Jen


Comment on the announcement on the Sundance website: http://www.sundance.org/blog/entry/documentary-film-program-provides-1.5-mm-in-grant-support-to-filmmakers-in-/

Like us on the Sundance Institute's Facebook page: https://www.facebook.com/media/set/?set=a.10152331427833515.1073741870.7148723514&type=1

Tweet the Sundance Institute to thank them for their support: https://twitter.com/sundancelabs

Monday, July 14, 2014

The only disability in life is a bad attitude ... BS!!!!

"that quote, "The only disability in life is a bad attitude," the reason that that's bullshit is because it's just not true, because of the social model of disability. No amount of smiling at a flight of stairs has ever made it turn into a ramp. Never. "
 
 
Nor has "just think positive" made it possible for me to do the things my body refuses to do -- I HAVE tried, and failed, and tried and failed again -- and constantly believing "THIS one is the cleaning lady who's going to actually clean" hasn't turned any of them into the ideal housekeeper; they're still just lazy louts who are annoyed that I insist on being in the house while they're here, meaning they can't spray a little PineSol around to make it smell clean and then spend the rest of the 4 hours watching their soap operas, or rifling my drawers for valuables.
 
The real disability is people who tell me stuff like that as a way of getting themselves off the hook of having to help.  The next person who responds to a request for assistance with some BS about "I'm sure you can do it if you try" will be retrieving body parts from a 100-foot radius, because, thank you very much, I already have tried and discovered that I can't do it, or that I re-injure myself doing it, and that's why I'm asking you for help, because I already know that I CANNOT do it.  I've hurt myself trying in the past.  I've told myself to trust that I can get to the kitchen or the bathroom despite the overwhelming dizzy spells and have come to on the floor, bleeding profusely, because I have a $&^%&!! disabling condition, not because I have a bad attitude that causes me to lose consciousness when I sit or stand.
 
 

Stella Young: I’m not your inspiration, thank you very much | Talk

 
I don't want to be told I inspire you -- I just want you to come over and help with the chores I need help with because I simply cannot do them myself.
 
And I don't want to be compared to your friend who also has CFS, but never complains about the problems it causes ... because she has a husband and child who do all the things she can't do, therefore, it causes her far fewer problems than it causes me.  She's not trying to hold down a job with CFS -- she has a husband to do that.  She's not trying to do yardwork or housecleaning with CFS -- she has a family to do that.  If she were in my position of trying to juggle doing it all with a major disability, she wouldn't be so sunny about it ... she'd be complaining, too, that she needs help and can't get it.
 
Go up to the search box at the top of this page and put in SuperCrip.  Read what I've said in the past about that concept.

What Those with Chronic Pain or Illness DON’T Want to Hear You Say

 
 
Read it before you open your mouth.  Then read it again.
 
Then read it one more time.
 
Then maybe, if you can say something that's neither stupid nor insulting, you may speak to me.

Final Stages | Documenting M.E.

 
"my body is literally starving itself to death. Even my best efforts to get food down have been met with frequent vomiting, rapid weight loss, and clear disease progression. The fight to get food down is exhausting. It involves closely monitoring nausea levels every single waking moment, waiting for the one minute window I may receive each day where my nausea subsides just enough that I think getting two or three bites down might be feasible. Even then, I nearly always lose the food anyway."
 
* * *
Been there, done that.
 
My quacks refused to believe I had such serious digestive problems, therefore, given that their solution was "you'd stop vomiting if you'd stop putting your finger down your throat", they weren't ordering IV nutrition, and because I didn't have an IV, I was told I didn't qualify for a nursing home because "you don't need nursing".  Catch 22, I couldn't get into a hospital or nursing home because I didn't have an IV or feeding tube, but I couldn't get one without being in a hospital or nursing home where medical personnel would see the proof that I threw up everything I ate.